Comment: Scotland needs free cancer drug access

So, while the growing parliamentary debate is important, it is crucial that MSPs understand this is an issue that affects patients across all constituencies; one that should unite rather than divide them in coming up with a solution.

The picture is clear: for bowel cancer patients across Scotland, securing fair access to medicines can be a lengthy, confusing and frustrating experience. There is real anger at a system that has been proven to be isolating, bureaucratic, time-consuming, opaque and which can ultimately drive them to foot the costs of drugs independently, do without the drugs altogether or, as in Maureen Fleming’s case, drive them over the Border to services in England where the same treatments are freely available.

June Rankin was diagnosed with advanced bowel cancer in 2010 and is being treated for the tumours that have now spread to her liver. Her doctor felt that a course of cetuximab would be a good treatment. However, the only course open to her was to fund the treatment herself. June is now faced with a bill of £720 each week to cover the cost of a treatment that has significantly reduced the size of the tumour on her liver and improved her quality of life.

There was much hope among patients like June that the recently published New Medicines Review (NMR), commissioned by the Scottish Government, would do more to address the problem. In truth though, the recommendations in the NMR do not go far enough to address the fundamental unfairness that patients report during the Independent Patient Treatment Request process.

In spite of the fact that they are recommended for treatment by expert clinicians, patients must still prove to expert panels that they are among the “exceptional” cases most likely to respond positively to the medicine in questions. This is Catch-22, as they will never actually have proof that they will respond to the treatment unless they are given the opportunity to try the medicine in question.

All that patients hear from politicians is that the issues are troubling and “difficult”. To put it bluntly, the tough choices faced by those deciding the fate of cancer patients are as nothing compared to those faced by patients themselves. Whether it’s a choice between not getting the treatment the doctors recommend because the NHS will not fund it; whether to use hard-earned life savings to pay for the drugs privately and at enormous expense; or to make the ultimate decision to leave family and friends and move south of the Border where the treatments are freely available.

Such hard, complex choices put the political dilemmas in the shade. Politicians of all parties must come together to deliver a system that makes these terrible decisions go away.

Ultimately, the onus is on all politicians to agree a system that works from the perspective of patients, underlined by insoluble key principles. Time is not on the side of cancer patients.

That’s why patients must be given an immediate assurance that they will not be denied treatment on the basis of cost. If a specialist oncologist tells a patient that a drug like cetuximab might work for them, they will get it.

We must see urgent recognition that Scotland’s cancer patients need a permanent solution to the problem of drug access. All sides of the political spectrum acknowledge that there is a problem; it is time that they came together with a common pledge to find a solution that works.

Whether that’s an expansion of the Rarer Medicines Access Fund set up by the Scottish Government earlier this year, or a wholly new solution matters little to Scotland’s cancer patients.

All that counts are the outcomes: free and fair drug access for all Scots who need them, no strings attached

• Mark Flannagan is chief executive of the Beating Bowel Cancer charity